Through the concrete physicality of the two figures and the arid landscape around them, Masaccio makes believable the first dolorous steps of human beings on earth, in the solitude of the shame of sin and the dramatic experience of pain. Quoted from ‘Medicine in Art’ Getty Publications. p.292
One of my patients, June, was standing near the entrance of the surgery when I came back from a home visit. June and I had been through a lot together in the two years since she came to see me with a breast lump, her subsequent mastectomy and chemotherapy, her husband’s dementia and death, and her depression and redundancy, but in recent months she had been steadily recovering and rebuilding her life and her health. The last few times we met she had been really well and we had time to talk about her plans for the future.
I was surprised then, when she turned abruptly away when I approached. I could tell something was wrong as I put my hand on her shoulder and I tried to look at her. There were tears rolling down her cheeks,
“Please go away, I don’t want you to see me like this. I’m so ashamed”
I was shocked, a sudden painful lump in my throat stopped me replying. What could be so awful, after everything we had been through, that she would feel like this? What had happened to our relationship to make her respond so strongly?
My immediate reaction was also to feel ashamed, ashamed that despite our frequent appointments I had no idea that she felt like this. I was ashamed that she was too ashamed to say.
I could smell the alcohol before she turned to face me, and I realised then how disheveled she was. “I’m so sorry”, she said. All I could think to say was, “me too”
Shame, according to psychologist Brené Brown, who has made the study of shame her life’s work, is not just is feeling bad about something you have done, shame is feeling bad about who or what you are,
Shame is easily understood as the fear of disconnection, is there something about me that if other people know it or see it, that I won’t be worthy of connection? … Shame is feeling that I am not worthy of love, care and attention … Underpinning shame is excruciating vulnerability, the fear of being seen as we really are.
Brené Brown: The power of vulnerability
Medical Sociologist Graham Scrambler who has a special interest in stigma and others, including psychologist Paul Gilbert who has spent years researching shame, make a distinction between ‘felt or internal shame’ and ‘enacted or external shame’. Felt (internal) shame refers to how we feel about ourselves. Enacted (external) shame is how we are viewed by others or how we think we are viewed by others. It is possible for someone who is obese to be aware that obesity is ‘highly externally shamed’, because we live in a society that frequently accuses obese people of being greedy and lazy, but not feel personally, internally shamed, because they are happy with their appearance, but there is a high correlation between external and internal shame … that is if one thought of oneself as inadequate one expected others to see the self in the same way.
We try to hide shame from others. Adam in the painting by Masaccio above is trying to conceal his identity and character, we are allowed to see his body but his face is burried in his hands. Eve by gendered contrast is attempting to hide her body but is really only able to cover her sexuality. Hers is by far the more disturbing image, unable to cover her face, her head is thrown back in despair. I find it fascinating, that six hundred years after this was painted, for men, shame is still strongly identified with character and for women, the experience is still so visceral. Because of shame, in social and clinical encounters we avoid scrutiny, by literally hiding away and avoiding social contact. When we do go out we are excessively submissive or passive and avoid questions or tell people what we think they want to hear rather than revealing what we are ashamed of. We deny our fears, uncertainty and vulnerability. In attempting to dull or suppress shameful feelings, we may abuse drugs or alcohol, or respond with irritability, anger or violence. Shame is strongly associated with depression, but even more strongly associated with social anxiety; we fear revealing our shame and withdraw from the world.
Given this, in my role as a general practitioner, shame must be almost ever-present, but I am writing about it now because I am ashamed that until recently, I’ve barely even noticed.
The things we are ashamed of.
“I haven’t made this appointment for myself, it’s about Dawn”. Dawn’s mother sat in front of me, looking serious, making sure I was paying close attention. Her 36 year old daughter was due to see me the following day. “She hasn’t seen a doctor in years. But she’s coming to see you about getting pregnant. But you need to know she’s really worried about her weight, that’s the reason she hasn’t been here before, she’s been trying to loose weight for years, and she knows that she has to lose weight, but she’s so sensitive about it, you know … so ashamed … in fact it’s got so bad she doesn’t even like going out these days, but when she comes to the doctors it seems like it’s the only thing you want to talk about and she never has a chance to talk about what she’s really worried about.”
It seems self-evident that for many women, the shame of being overweight is both felt and enacted, but the problem with things that seem self-evident is that being embedded in a shaming culture, we tend not to notice shame until we start to think about it. Sociologist Deborah Lupton has just published a book, called simply, ‘Fat’ which explores this in detail. Few doctors, I am sure, have ever questioned what we mean when we use the word ‘obesity’, other than a Body Mass Index of more than 30, but as Lupton explains,
‘obesity’ in particular as an officious medical term which designates fatness as pathology by its very use. Thus, to describe someone as ‘obese’ immediately places that person within the purview of medicine as someone who has the disease of ‘obesity’ and is therefore considered abnormal, inevitably unhealthy or at high risk of disease and thus as requiring medical intervention to reduce his or her weight.
GP Dr Ellie Cannon, recently wrote in the Daily Mail, “Fat, truth be told, is neither a feminist nor a cosmetic issue. It is, quite simply, a health issue.” From my experience as a GP, ‘fat’ is anything but simple, as a previous blog about Doctors, patients and obesity makes clear. The pictures of scantily-clad young women published by the Mail that accompany Dr Cannon’s column online make it abundantly clear that fat is a very much a feminist and a cosmetic issue. Underpinning these different issues are the moral opprobrium and associated shame that accompany the experience of being fat and labelled obese.
We live in a medical culture that increasingly defines health and illness in terms of risk-factors, so that everyone is potentially ill. Associated with this is the idea that everyone is capable and hence responsible for modifying their risk factors. The neo-liberal emphasis on individual, rather than social change reframes complex interacting risk-factors for disease as issues of personal behaviour and choice, putting the emphasis on self-care and personal responsibility rather than taking political action to tackle the social and economic determinants of health and desease. Piggybacking on this is IT entrepreneurialism and a burgeoning personal surveillance culture in which with the aid of mobile digital devices our habits may be continually monitored. All this is beautifully summarised by Deborah Lupton.
The pressure on medical professionals to increase the emphasis on individual behaviour is evident in ‘Make Every Contact Count‘, a government attempt to get health professionals to discuss lifestyle habits whenever they meet a patient. Many GPs, aware of the myriad pressures on their patients, are uneasy about this and it has prompted one to respond with a blog titled, ‘The Right Not to be Lectured to’.
When an illness is viewed as resulting from carelessness, lack of self-discipline or licentious or illegal behaviour, the ill person becomes treated with moral opprobrium (see the essays in Brandt and Rozin 1997a; Lupton 1994, 1995, 2012). Obesity shares aspects of the moralizing discourses which give meaning to many medical conditions which are believed to be the result of ‘lifestyle choices’, such as lung conditions caused by smoking, liver conditions caused by excessive alcohol consumption, hepatitis spread through injecting drug use or sexually transmissible. (Lupton, ‘Fat’)
It is of little surprise then, that other habits like smoking and their associated diseases like cancer are also strongly associated with shame and stigma. The mainstream medical literature has surprisingly few papers on the subject of shame, but perhaps the best is about the stigma, shame and blame experienced by patients with associated with lung cancer.
Some patients said that family or friends had not been in touch since they heard about the diagnosis. One patient with mesothelioma said that his daughter had not telephoned because she felt “dirtied” by contact with cancer.
About 90% of lung cancer is associated with smoking, but it is not just the smoking that is the source of shame. Patients from around the world with different types of cancer report shame and stigma, as the two short films at the end of this blog show.
Other illnesses are even more strongly associated with shame, in particular mental illness and sexually transmitted diseases. Traumatic experiences, in particular child sexual abuse, rape and domestic violence are also strongly associated with feelings of shame. A considerable amount of my work as a GP involves caring for patients who attend very frequently, are addicted to drugs and alcohol, who repeatedly self-harm, who have eating disorders and who all share the experience of being sexually abused as children. According to a national crime survey, 13% of respondents who experience rape or sexual assault express shame. They make a significant impact on me as a GP. People who are abused perhaps blame themselves in an attempt to rationalise their experience, or as a consequence of how they are forced to act or appear. In 86% of abused women, the self blame tendencies disappeared after they left the abusive relationship; once the external shaming abuse has resolved, for most women the internal shame is resolved.
When something awful happens, it is natural to ask, “Why is this happening to me, what have I done to deserve this?” And in desperately seeking an answer, we are led to conclude, “I must have done something, therefore this must be my fault”. Once the horror of the abuse is over, we are able to see from a distance, that actually we didn’t do anything to deserve it, and we are not to blame.
One lesson from The Book of Job is that when faced with extraordinary personal suffering, the ability not to blame oneself is exceptional. Job suffered extraordinary misfortune including the loss of all his family, his wealth and then, dramatically and horrifically, his health. Over and over again, he asked God what he had done to deserve to suffer. His friends, the priests insisted that he must have done something wrong, even if he couldn’t think what it might be. Most of us would have given in, and in despair, found some reason to blame ourselves.
Shame and ageing.
Ageing is associated with dependency and loss. Dependency on family, friends, professionals and the state. Losses include memory, mobility, continence, status and youthful looks.
The signs of ageing have become so abhorrent and pathological that they are conceptualized as distorting and hiding the ‘real’, essentially youthful self behind the ‘mask’, and as a disease needful of cure. D.A.Lupton
Elderly patients often endure embarrassing problems like incontinence for months or even indefinitely without asking for help. Falling is particularly associated with shame. Shame adds to the loneliness and isolation experienced by the elderly, exacerbated by loosing sight and hearing, mobility and confidence, friends and family. It is of little surprise, but very sad that shame is highest in older age.
Shame and deprivation
There is a great shame associated with poverty and life on benefits, exacerbated by a contemporary political culture that views people without jobs as a burden on respectable taxpayers. Poorer patients present later to doctors with symptoms of lung, bowel, breast and other cancers. In the last few months two of my patients, one with anal cancer and one with breast cancer, presented after suffering distressing symptoms for months. Both said they felt ashamed; they were afraid and embarrassed, they blamed themselves for the cancer and they blamed themselves for leaving it so long before coming to see me.
This quote below is typical of what my poorer patients say to me every week,
“Every time someone tells someone on sickness benefits that they are scrounging, or that they are not contributing to society, their self-confidence – already low from the humiliation of the benefits system and the misery of poverty as well as their experiences and suffering from their actual condition that got them there in the first place – slips further beyond the point of retrieval, until they are in danger of being frightened to attempt to partake in the world any more, yet alone go out and get a job.” Stigma of being on benefits prevents recovery from depression
In his book, ‘Chavs’, Owen Jones charts the demonisation of the working class. When I asked him why he didn’t write about the impact of shame and stigma he replied, “To be honest the problem was there’s no lack of possible material – which sort of makes the point in of itself” via twitter
In a 2011 BritainThinks survey about class:
There was a strong feeling in the focus groups that the noble tradition of a respectable and diligent working class was over. For the first time, I saw the “working class” tag used as a slur, equated with other class-based insults such as “chav”. I asked focus group members to make collages using newspaper and magazine clippings to show what the working class was. Many chose deeply unattractive images: flashy excess, cosmetic surgery gone wrong, tacky designer clothes, booze, drugs and overeating. By contrast, being middle class is about being, well, a bit classy. Independent
I work in an area with high levels of poverty, abuse, anxiety, depression, substance abuse, smoking and obesity. All these factors are ‘co-morbidities’, factors that compound one-another, amounting to more than the sum of their parts and so there is a great deal of shame. But it doesn’t matter where you live or work, because people suffer shame everywhere.
I think doctors and other medical professionals are particularly prone to shame. Those of us whose work is – as Iona Heath, president of the Royal College of GPs recently described it, ‘A Labour of Love’ – may be at particular risk. Our work has two characteristics:
First, work undertaken from fondness for the work itself and/or secondly, work that benefits persons whom one loves.
Both of these characteristics are relevant to the work of public service professionals.
My attachment to my work is so strong that it is undoubtedly part of my personal identity. This makes it very difficult to separate the emotions of attachment such as happiness or even love when things go well, and anger or sadness when they go badly.
Whereas guilt is feeling bad about what we have done, shame is feeling bad about what we are.
Medicine, especially the personal, holistic care that characterises general practice depends so much on matters of personality like kindness, respect, and empathy, that to fail clinically can be experienced as a failure of personality.
In dealing with others vulnerability, we tend to suppress or deny our own. In dealing with uncertainty, we tend to over-estimate diagnostic and treatment certainty. We are poor at admitting our mistakes and saying sorry. We are prone to drug and alcohol abuse and depression. All of these things are symptoms and signs of shame. We need not experience cancer or depression to treat patients with these problems, but, as Brown says, “shame is universal, everyone has experienced it, the only people who don’t experience shame have no capacity for human empathy or connection.”
Doctors also report feelings of shame in relation to our own experience of sickness; ‘their professional identity is shattered and they fear colleagues’ disapproval’.
Shame nearly led to my death as a junior doctor, because I was ashamed at my inability to diagnose myself, and I feared humiliation more than death:
I had less than a month to go before the end of my second hospital job after qualification in 1996. I had been working as a surgical house officer for 5 months, and had taken off a weeks holiday to go walking in Scotland. I caught the train to Glasgow and the whole journey felt nauseous and feverish. When I arrived I met a friend and he could see I looked unwell. I joked that it was probably psychosomatic or Munchausen’s disease, because I imagined I might have appendicitis, one of the commonest conditions I dealt with as a junior surgeon. My stomach grumbled and I sweated uncomfortably for a few hours before catching the train on to Fort William. I prodded my stomach trying to elicit the clinical signs of appendicitis – rebound tenderness or guarding over McBurney’s point – without success.
At Fort William I figured that if I really had appendicitis I would be in far more pain, so I changed my working diagnosis to gastroenteritis and set off up the glen of Nevis. I made slow progress due to hopeless map-reading skills as much as deteriorating health, but eventually found a bothy before nightfall. Unfortunately a group of school children occupied it and I had to pitch my tent outside. I spent the night pouring with sweat and shivering with fevers, whilst insects feasted on my naked torso that hung outside the tent because the heat I was generating inside was unbearable. The following morning I felt worse than ever and I decided that I must have appendicitis. I asked the teacher supervising the group if I could use his phone -in those days a mobile phone weighed as much as a brick, had a battery-life of minutes, and cost a small fortune to use. He told me that he could only use it for emergencies for his group. I was in no state to argue, but in part I didn’t want to push it because of the nagging doubt that I might be wrong about my diagnosis. There was a rainbow in the sky before I left, and in the visitors book I wrote, that if I should die, then I’d like my friends and family to know that one of the last things I saw was a a beautiful rainbow.
It took me all day to walk back to Fort William even without getting lost. The last couple of miles into town were along a road. I was so tired and sick I really didn’t think I could make it, so I lay down in the road hoping someone would stop and pick me up. One car drove past, the driver swearing at me to get out of the fucking road, so I got up and staggered all the way to Fort William Hospital. I walked up to the main doors and stopped. I prodded my stomach again … and again. What if it wasn’t appendicitis? I could imagine the surgeon inside examining me sceptically, asking me where I trained and worked, and then asking me to list the signs and symptoms if appendicitis. I began to panic, I had come all this way, but I couldn’t go in to the hospital. Instead I turned around and headed into town to find a phone-box so that I could call a friend. I burst into tears as soon as Becky answered the phone and I blubbed my story. “What on earth are you waiting for? Go back to the hospital, of course it’s ok!” The relief was enormous, I went straight back and into the hospital. The surgeon couldn’t have been kinder, though when he told me that he thought I had a retro-peritoneal abscess and the last time they tried to treat one surgically they had ended up removing half the patient’s colon and this left them with a colostomy (or at least that’s how I remember it) I burst into tears again. Luckily for me, after 10 days of intravenous antibiotics and fluids I recovered without surgery.
Medical education has traditionally involved large amounts of shame and humiliation, with public interrogations of students on ward rounds in front of patients and peers. The fear of being unable to answer is so overwhelming that I was more afraid of mistaking something benign, like gastroenteritis for something potentially life threatening, with apparently classic signs and symptoms, like appendicitis, that I couldn’t present myself to hospital.
Professional shame and privilege.
I am extraordinary privileged. I am as secure as can be in a highly respected, well-paid profession, living and working in – and profiting from – an extremely unequal society. Simone De Beauvoir, reflecting on her shame of complicity in french Colonial domination, wrote:
I know that I am a proﬁteer, and that I am one primarily because of the education I received and the possibilities it opened up for me. I exploit no one directly; but the people who buy my books are all beneﬁciaries of an economy founded upon exploitation. I am an accomplice of the privileged classes and compromised by this connection … When one lives in an unjust world there is no use hoping by some means to purify oneself of that injustice; the only solution would be to change the whole world, and I don’t have the power. Quoted by Guenther
I know that I too am a profiteer. I cannot separate myself from the social and professional structures that protect me. I am associated not only with the good that is done in the name of my profession, but also with the careless, unethical, venal, self-serving, disrespectful, murderous behaviour that is carried out as well. I am ashamed that as my patients are being forced into deeper poverty and NHS services are under threat, I and other members of my profession not only failed to stop the appalling NHS bill, but many actively encouraged it and are profiting already from a system that rewards entrepreneurialism but not caring.
No profession is free of guilt and no man or woman is free of shame, except those who lack all capacity for human understanding. We cannot possibly care for others to our full potential without facing up to our own shame or admitting our own vulnerability.
Until we attend to the culture of shame that surrounds medical error, we will be only nipping at the edges of one of the greatest threats to our patients’ health. NYTimes
Shame and forgiveness.
In dealing with shame, we need to understand forgiveness, and to do this we need to be honest with ourselves. To be honest with ourselves we must acknowledge our weaknesses and to do this we must understand vulnerability. Whereas shame is characterised by fear of exposure, like Adam and Eve above, vulnerability is openness. We almost all make the mistake of treating our own and others’ vulnerability as weakness, but to do so is to retreat into shame, self-loathing and hatred. But vulnerability need not be weakness; vulnerability can also be understood as the courage to expose one’s emotions including shame, to admit that we don’t know or to admit that we made mistakes.
I’ve written about vulnerability in another blog post inspired by psychiatrist, David Bell,
Our relationship with awareness of our own vulnerability is far from comfortable – we have a natural tendency to locate it in other people – it is he, not me, who is in need, it is she, not me, who is vulnerable. David Bell
The remarkable video lecture from The Forgiveness Project, linked below starts with a quote from Aleksandr Sozhenitsyn,
“If only it were all so simple! If only there were evil people somewhere insidiously committing evil deeds, and it were necessary only to separate them from the rest of us and destroy them. But the line dividing good and evil cuts through the heart of every human being. And who is willing to destroy a piece of his own heart?”
― Aleksandr I. Solzhenitsyn, The Gulag Archipelago 1918-1956
Forgiveness requires not only coming to terms with our own dark-side, but also with our own vulnerability. The first presentation in the lecture is from a forensic psychiatrist who works at Broadmoor high security psychiatric hospital. In attempting to define violence she says it has to involve intentional suffering inflicted on the vulnerable and contempt for the victim’s vulnerability.
For the perpetrator, it is about denying their own vulnerability, and yet each one of us has been vulnerable and will be vulnerable. It is not possible to have a long and happy human life without being vulnerable. The exploitation and attack on vulnerability is about a type of fear and distress and panic … and I see it in society, we have a ‘denigration of vulnerability’ … [and this] fatally undermines our bonds of human connectivity.
We are only able to forgive if we are able to come to terms with our own vulnerability and the vulnerability of others. Brown links this to shame:
[we need] courage to be imperfect, compassion to be kind to ourselves, connection as a result of authenticity, fully embraced vulnerability, [and to] believe that what made [us] vulnerable was necessary, unrequited …
Therapy for homicide offenders at Broadmoor aims to help them ‘rework their narratives of passivity into narratives of agency, so they take responsibility for their actions. They are encouraged to accept who they are, so that they can move on’. From a Christian perspective much of this is basic scripture. To confess our sins is to acknowledge our imperfection, vulnerability and weaknesses and be honest with ourselves. To pray for forgiveness is to pray also that we are able to forgive ourselves. To believe in a loving God who loves us in spite of our sins, is to believe that we are worthy of love. Forgiveness is about not engaging with hatred, it is about finding the capacity to have compassion for the parts of ourselves we loath.
For serious offenders, and others who experience deep shame, group support is vitally important. Because we hide shame, we hide ourselves and the greater the shame, the greater the disconnection and social isolation. The process of forgiveness and recovery has to involve reconnecting with others. The antidote to shame is empathy.
Shame is a cause of unhealthy behaviour, not the solution.
The way our patients present, with depression or addiction, anxiety or isolation may be a symptom or a cause of shame. It may be a sign of past or ongoing abuse. Shame stops patients at highest risk of serious illness from presenting with serious symptoms of heart disease or cancer, mental illness and other diseases. Shame stops doctors and patients from being honest with each-other; we collude and fail to address the important issues because we are afraid of opening ‘cans of worms’ and revealing shame. Shame makes us cling to false certainty, stops us admitting we don’t know and stops us saying sorry. Acknowledging our vulnerabilities – our fears and uncertainties – makes us more human. To address shame we need empathy and compassion. We need to created relationships that are safe, respectful and trusting enough that patients experiencing shame are able to be vulnerable, to open up emotionally and connect.
Doctors have a responsibility to act as our patients’ advocates, which must include speaking up about structural inequalities and social prejudice, the social determinants of shame.
Resilience and a solution to the problem of shame comes from believing that we are all worthy of love, care and attention. For Brown, “our job is to look at our kids & say, “you know what, you’re imperfect, and you’re wired for struggle, but you are worthy of love and belonging”.
For doctors, our job is to meet with our patients and say, “you know what, you’re imperfect, and you are struggling, but you are worthy of the very best care and compassion I have to offer”.
We all feel shame, you are not alone.
This is the fourth part of 4 related blogs
Part 1: Do Doctors need to be Kind?
Part 3: Medical Advocacy
Who is the NHS for? Not me! Post about vulnerability denial and welfare cuts
Other references and articles:
Stigma, shame, and blame experienced by patients with lung cancer: qualitative study http://www.bmj.com/content/328/7454/1470
Something In the Air
When a Smoker Gets Lung Cancer, Sympathy Is Stained With Blame http://www.washingtonpost.com/wp-dyn/content/article/2008/12/12/AR2008121203425_pf.html
Stigma and Silence: global perceptions of cancer
Stigma and Silence, Global perceptions of cancer 2
Brené Brown. The Power of Vulnerability
Brene Brown: Listening to Shame
The Forgiveness Project lecture, “The Line Dividing Good and and Evil”
Shame and the Temporality of Social life Lisa Gunther
The importance of physical contact in theraputic relationships Blog by Dr Laura Jane Smith ‘The Human Touch’